I'm Stella and I'm 14 and I go to Cambridge High School.
Stella was a mermaid in a past life
that's what her Dad Hayden says about her.
She's never really been able to use her legs much
but she's always been a beach baby and loves the water.
And her favourite food?
Seafood.
Yeah your Dad said you've been eating raw oysters since you were two.
So, would that be your dream, to have a platter of raw oysters every day or something?
Yeah.
What other seafood do you like?
Anything.
Anything seafood?
While she can't use her legs, her Dad says he carries her down to the beach where she
loves to be the most and the pair go surfing together.
I just dunk her under the waves because over the years of surfing you get to understand how
the waves work and so I'm confident when I've got her, when I need to go under with her
I can and give her a bit of fun out there.
It’s just our little thing and it’s great and she’s got that freedom of her legs moving
independently so it’s a really good feeling for me and I love doing it.
Hayden describes his daughter as courageous, brave and beautiful.
She was born beautiful and she was smiling at a very young age
like a couple of days old we’re pretty sure she was smiling.
She's always been happy.
The day we found out was very surreal kind of day, we almost grieved for her.
But I remember Stella was in bed and she was asleep and we had family round and everyone
was upset and crying, and then Stella woke up and I went and brought her out and was
all happy and smiling and like everyone’s come here to see me and everyone was wiping
away tears because of the emotion of finding out about that.
That was a very surreal kind of feeling.
At 15 months Stella was diagnosed with Spinal Muscular Atrophy or SMA type 2
a childhood version of motor neurone disease.
It's a rare genetic disorder which slowly eats away at a person's muscles
limiting their mobility and often leading to an early death.
The news was a shock to Stella's parents because her development as a baby was advanced
At 7 months old she could ride a plastic toddler tricycle.
But months later when she was frequently falling off her tricycle
her mother Emily decided to consult a doctor.
Emily was 40 weeks pregnant with their second child when she learnt the news.
He said that she would be lucky to make it out of childhood,
that some children survive into teenage years
and that very few make it into adulthood.
He also said that we needed to consider an end of life plan
and how long we would go before we pull the plug, how long we'd keep fighting for Stella.
And then he called my midwife because he was worried that I'd go into spontaneous labour
and she came around to our house and she’d actually lost her first born daughter to SMA
at around six months, about 20 odd years ago, so we all just sat on the carpet and cried.
It's really hard to keep on going when someone's
told you that your beautiful baby might not survive childhood.
Over the years, Stella's ability to move has declined.
The background to it is that if she’s not using it, she’s going to lose it,
and her trunk muscles are going first.
So, the big muscles deteriorated fairly quickly and this kind of movement has been a lot slower.
If you're listening on the radio, Stella's father was demonstrating how her ability to
use her hands is among the last small movements she has left.
The nature of the disease, you've got the nerves die that control the muscles,
your motor muscles and then so the muscles waste away.
Also, as you grow, it’s a greater weight for your muscles to lift, so you’ve already
got tiny weak muscles, you’re growing, so those tiny weak muscles can’t do as much.
Now, the young teen can't brush her hair or her teeth and is struggling to feed herself.
I think the disease, it’s just progressive.
You just keep losing abilities, you just keep losing movement.
1 in 50 people can carry the SMA gene but do not have the disorder themselves.
But when two parents carry the SMA gene there's a 1 in 4 chance that their children will have it.
It's a bittersweet relief for the family that Stella's two younger brothers don't have SMA.
Harry is 13 and Max is 11 and they're both very annoying.
What's annoying about them?
Everything.
I have to give them lollies to do get them to do stuff.
So you're still the boss really, aren't you?
Yeah
Stella has had three spinal surgeries and multiple operations on other parts of her body.
She was the first person to get magic rods which grow with a remote control
so prior to that she would have had to have spinal surgery every 6 months so that they would
be able to grow the rods as she grew.
So she got these rods put in, they're $49,000 just for the hardware
So the cost to the health system is huge for SMA patients.
Yeah, so she had that one and then about a year later those rods failed so they replaced those
and then just a month ago she had her final spinal fusion.
So they took out the old rods, put in new rods and then they used donor bone
and put that in between every vertebrae right from the bottom of her spine up to the top.
And the surgeries have been traumatic.
You're supposed to just wake up and your parents there and you’re supposed to be quite sedated,
but Stella was just screaming, screaming, screaming, crying
and the anesthetist came and apologised and said I think I’ve underdone the dose
but Stella didn't speak for four days after that surgery.
Spinraza became the first approved drug used to treat SMA and it's funded in 49 other countries.
It's been proven to halt the disorder in its tracks but Pharmac still won't fund it here.
Emily and Hayden say Stella's friend who also has SMA 2 and lives in Australia has had some
of her muscle deterioration reversed because she has access to Spinraza.
Hayden says Stella's friend can now do simple things she couldn't do before
like turn on a light switch.
If this drug was available then her world changes and that's a simple fact
and that's what's happening all around the world, everywhere except New Zealand.
It's sad to be a New Zealander, which is horrible to say
but we’re proud, but she's missing out unfortunately because we're New Zealanders.
About 70 people in New Zealand are thought to have SMA but because the subsidy would
only be available to those under 18, only about 30 people would require treatment.
The cost of Spinraza for the first year of treatment alone is around $1million dollars.
But Emily and Hayden believe if it was funded here, Pharmac could negotiate to get a cheaper price.
So I had a lot of hope that science would come through for us,
and it’s finally come through, which is awesome, but it's just so hard knowing it's there,
but we can't access it, and meanwhile Stella goes downhill.
Emily and Hayden say it's devastating knowing that the drug is out of their reach.
We're not billionaires and I don't think anyone with SMA out there's got any access to the
kind of money they're talking about.
It's quite sickening really to think about how they can justify that for the health of children, kids.
While the drug comes at an extremely high price, Emily says Stella's disorder has also
brought ongoing costs to the New Zealand government and it all adds up.
The costs of all her interventions, the modifications that they’ve done at the school,
teacher aides that they hire, all the surgeries, everything that Stella’s accessed
it costs the government and tax payers, so much.
And that's not including the cost to the family of special vehicles to accommodate a wheelchair.
Stella still goes to school and her mother says they've always found a way to keep their
daughter mobile with family members pitching in financially to help.
We give Stella the best life we possibly can, we've taken her to Rarotonga,
I've broken my leg carrying Stella, broken my femur.
We'd give everything for Stella.
Hayden says it sickens him that the battle for Stella's life comes down to money and
both he and Emily are among other parents who are desperate for the government to fund Spinraza.
These are children and for us it's life and death. It's her future.
You know it's just. It goes back to being unfortunately stuck in New Zealand, 'cause that, that’s sad.
For First Up, Indira Stewart.